Why being an #Autism parent is so overwhelming and stressful

Over the many years that I’ve been writing about our Autism journey, I’ve tried very hard to help people understand the very basics of how Autismcan impact a family.

Unfortunately, that effort hasn’t always been successful.

When the people in your life don’t understand, it only serves to make life that much harder. Autism Parenting is so incredibly overwhelming and feeling like people don’t get it or worse, they judge you, makes things so much more difficult.

Autism parenting is overwhelming for a million reasons and those reasons may vary for everyone but I can at least share why it’s so overwhelming for me.

I don’t think there’s a day that goes by where I don’t feel completely overwhelmed by all the responsibilities I have.

I feel like I’m in a constant state of fight or flight because I’m always on edge. As a parent to three boys with Autism and various other special needs, I have to think ten steps ahead of the kids as well as physically be ten steps ahead of the kids. Without doing that, it’s nearly impossible to ensure their safety.

Everything that the rest of the world tends to take for granted, is something that I either never get to experience or have to wage war in order to get for my kids.

I worry about my kids from the moment I wake up to the moment I fall asleep at night, assuming I even get to sleep at night.

Speaking of that mysterious thing called sleep, if or when I find it is entirely dependent on if or when my kids do themselves. I’ll be real upfront and honest, if you look up chronic sleep deprivation, you’ll see my picture there.

I can’t even begin to explain the sheer level of exhaustion that is a byproduct of chronic sleep deprivation.

Even if sleeping at night wasn’t a problem, taking the kids to all their therapies, doctors appointments and simply trying to stay a head of them is exhausting enough. That doesn’t even take into account trying to meet all their unique physical, emotional and sensory needs.
Just so we’re clear.. If you assumed that having three kids with the same Autism diagnosis, meant that I have three kids with the same struggles, you’d be assuming incorrectly and I’d be inclined to remind you what they say about people who assume. 😉

The reality is that each one of my three kids is unique in every way.

Saying that everyone with an Autism diagnosis is the same is like saying every person is in the world is the same because we’re all human beings. Sure there’s things that are common across the board but that’s about it.

Each one of my kids have unique and oftentimes conflicting needs. This means that by providing one of my kids with something they need, I can be causing distress for one of my other kids. This is especially true when it comes to their sensory processing needs.

I have to make at least three different dishes for each of the three daily meals (often multiple times) because no one will eat the same thing and if I don’t cater to their food proclivities, they will go hungry.

If you assumed that kids with sensory related food proclivities will eat if they get hungry enough, you’d be assuming incorrectly and I’d be once again inclined to remind you what they say about people who assume. 😉

Kids with sensory related food proclivities will not eat sensory offensive even if they’re really hungry, anymore than you or I would eat a cat turd out of the litter box.

This is something that happens every single day of my life and if I don’t cater to my kids unique needs, they’ll end up losing more weight. This is a serious problem.

Few things are as fun and rewarding as powerlessly watching my oldest child go through a psychotic break for the umpteenth time. That’s sarcasm by the way. It’s truly one of the most heartbreaking things I’ve experienced in my life.

Then of course there’s all the medications and treatments I have to perform daily or weekly, to battle the things that make my sons physical and emotional health so fragile. I have to stay on top of and properly manage roughly 30 different medications between myself and my three kids. That’s daily and sometimes multiple times daily.

Everything is a battle.

I routinely battle insurance companies, fight for what my kids need in school, deal with ignorant people in the public arena who are all too willing to share their opinions of my kids with me, manage the inevitable daily meltdowns over things I oftentimes have zero control over and go to the ends of the Earth and back to meet sensory needs that are damn near impossible to meet.

Don’t even get me started on getting some of my kids to actually wear clothes, shoes or socks. Seriously, that’s in a whole didn’t Universe of difficulty.

What I’ve written above are just the things off the top of my head. I didn’t get into the guilt because that’s a post by itself. There are a million things that are just as exhausting and overwhelming for me that I didn’t mention.

I’m so tired all the time and even when I sleep I don’t sleep well because I have to sleep with one ear open.

Finally, I wouldn’t be doing this post justice if I didn’t mention something that no one wants to talk about and that’s the physical and emotional health of the parent. In this particular case, that would be me.

I would be remissed if I didn’t talk about how all the stress, anxiety and constant state of hyper-vigilance impacts me as a person.

Aside from stress eating and totally lacking anything that even resembles energy, I’ve also been waging a war with Depression. This has been a longtime war but it’s absolutely harder to manage when I’m constantly buried by all the things I need to do, all the things I’ve failed to do and all the things that I worry about.

This is just a portion of my personal experience and keep in mind that this doesn’t even touch on all the everyday life things that I do my best to muddle through but typically have to back burner.

I don’t know if this is something that is easily understood but I would think that at least someone out there can relate and if you can, please leave a comment below. Actually, I’d love for everyone to leave a comment and simply share your thoughts, opinions or questions.

Take a second and answer today’s Autism Parenting poll

Would you support a cure for Autism?

Yes

No

Depends on what that cure is.

No but i would support a cure for neurotypical stupidity and ignorance.

No. I would, however, want alleviation of the challenges associated with my autism (such as social challenges, meltdowns, and self injurious behavior), but I would never want to re-wire my brain to erase who I fundamentally am. I do, however, respect the autistics and parents who DO want a cure.

People don’t understand. Like the food thing. People tell me – tell him eat what you put in front him or don’t eat anything. He will choose not to eat. He would choose not to eat for days. He wouldn’t eat icecream for years because it was too cold. He only just started not counting his bites. Not eating his food until it was mush and then chewing some more. To me, that is a small victory. I live in texas the answer – even from one dr i had years ago is whoop his ass – all the quirks… Read more »

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2 years ago

Member

dotdash

What if the job you are trying to do is just too difficult? What if it is really just too much work, too much stress, too much pain for any one person to handle? I know you are doing it, so in some sense it is survivable, but you are chronically depressed, sleep-deprived, stressed out, anxious. If this were a job causing this, everyone in your life would tell you to quit. Because it’s your kids, you can’t quit, of course. But how long can you keep going? Now you’ve got an invalid wife again. It’s really a miracle you… Read more »

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2 years ago

Member

dotdash

Sorry, that comment doesn’t read the way I meant it. I meant to say that your job really is hard, maybe too hard. I respect you for going at it every day and mustering the energy necessary to go ahead. And also, I do worry about you and I hope things will get easier.

Thank You so much for caring. Yes, my job is hard and finding the energy sometimes is not easy. Having said that, it’s entirely worth it and I’ll be just fine. As I slowly begin to financially stabilize, we can make improvements to our lives that make this gs safer, less stressful and more efficient.

I don’t expect this to really get easier but I do believe that I’ll continue up to find the strength to move forward.

Thank You so much for caring. Yes, my job is hard and finding the energy sometimes is not easy. Having said that, it’s entirely worth it and I’ll be just fine. As I slowly begin to financially stabilize, we can make improvements to our lives that make this gs safer, less stressful and more efficient.

I don’t expect this to really get easier but I do believe that I’ll continue up to find the strength to move forward.

What if the job you are trying to do is just too difficult? What if it is really just too much work, too much stress, too much pain for any one person to handle? I know you are doing it, so in some sense it is survivable, but you are chronically depressed, sleep-deprived, stressed out, anxious. If this were a job causing this, everyone in your life would tell you to quit. Because it’s your kids, you can’t quit, of course. But how long can you keep going? Now you’ve got an invalid wife again. It’s really a miracle you… Read more »

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2 years ago

Member

dotdash

Sorry, that comment doesn’t read the way I meant it. I meant to say that your job really is hard, maybe too hard. I respect you for going at it every day and mustering the energy necessary to go ahead. And also, I do worry about you and I hope things will get easier.

Thank You so much for caring. Yes, my job is hard and finding the energy sometimes is not easy. Having said that, it’s entirely worth it and I’ll be just fine. As I slowly begin to financially stabilize, we can make improvements to our lives that make this gs safer, less stressful and more efficient.

I don’t expect this to really get easier but I do believe that I’ll continue up to find the strength to move forward.

Thank You so much for caring. Yes, my job is hard and finding the energy sometimes is not easy. Having said that, it’s entirely worth it and I’ll be just fine. As I slowly begin to financially stabilize, we can make improvements to our lives that make this gs safer, less stressful and more efficient.

I don’t expect this to really get easier but I do believe that I’ll continue up to find the strength to move forward.

People don’t understand. Like the food thing. People tell me – tell him eat what you put in front him or don’t eat anything. He will choose not to eat. He would choose not to eat for days. He wouldn’t eat icecream for years because it was too cold. He only just started not counting his bites. Not eating his food until it was mush and then chewing some more. To me, that is a small victory. I live in texas the answer – even from one dr i had years ago is whoop his ass – all the quirks… Read more »

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2 years ago

Guest

Amy Diane Leigh

People don’t understand. Like the food thing. People tell me – tell him eat what you put in front him or don’t eat anything. He will choose not to eat. He would choose not to eat for days. He wouldn’t eat icecream for years because it was too cold. He only just started not counting his bites. Not eating his food until it was mush and then chewing some more. To me, that is a small victory. I live in texas the answer – even from one dr i had years ago is whoop his ass – all the quirks… Read more »

Vote Up0Vote Down Reply

2 years ago

Guest

Amy Diane Leigh

People don’t understand. Like the food thing. People tell me – tell him eat what you put in front him or don’t eat anything. He will choose not to eat. He would choose not to eat for days. He wouldn’t eat icecream for years because it was too cold. He only just started not counting his bites. Not eating his food until it was mush and then chewing some more. To me, that is a small victory. I live in texas the answer – even from one dr i had years ago is whoop his ass – all the quirks… Read more »

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2 years ago

Guest

exhausted too

my son has no receptive language and cannot tell me anything. every time he hurts himself i feel the pain too. every time.
it is exhausting, having to rescue him from himself everyday. or to watch him regress over and over.
one day at a time. take everything one day at a time. life is short, the worst that can happen is we’re all gonna die anyway. live and let live

Thank you for sharing your experience. I can relate to much of what you said. Life is short, you’re right..

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1 year ago

Guest

Nancy

God bless you for being an amazing and caring mother, against all odds. I have a 14 year old autism son and I go through the same things that you go through every single day. It’s a battle and I had to learn to put my sons health and well being first and put mine in the back burner. I understand all your struggles, sleepless nights , all your stress, it is not easy but I keep on pushing myself to learn more about autism and how I can better help my son and myself in handling and dealing with… Read more »

Nancy, Thank you so much for the kind words. It’s incredibly nice to meet you. It so nice to connect with people who get it. ☺ If I may offer a piece of unsolicited advice, please take care of yourself. So often we get caught up in the putting our kids first thing, that we neglect ourselves. If something happens to us, who will be there for our kids? I know it’s so much easier said than done and I struggle with this as well. Just remember that you need to be selfish before you can be selfless.. ☺ Best… Read more »

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1 year ago

Guest

Stephanie

You are doing a great job. Keep up the hard work. Reading these comments….dont you love parents with typical children giving you advice on autism? Clueless morons….

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9 months ago

Guest

Moe

What is it you think parents without autistic children take for granted? Other parents also have appointments,meals, house cleaning, tantrums, sports, homework, jobs. All of these things. Maybe not to the same degree, but you act as if people don’t understand or get to see it from your side. Have you ever tried seeing from their side? And as for your energy level, I’ll suggest this again, get your testosterone checked And now with Lizzie back, isn’t this easing up a little for you? Can’t she take some of this weight? And the sleep thing, IMO you put the kids… Read more »

I meant no disrespect but you don’t get it… It’s okay that we don’t agree.

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2 years ago

Guest

Moe

It doesn’t take anything away from what you do to say yes all parenting is exhausting. I said it wasn’t the same level, but it’s like you refuse to be anything other than ‘the worst off’ when that’s simply not the case. All parenting is hard, just different levels of hard. It’s ok for you to try and say that without a but at the end of it. I may not have therapy sessions with 3 kids. But often times I have 2 kids that have to be at different places at the same time and only one of me.… Read more »

There is a world of difference and whether you choose to acknowledge that or not is up to you. It’s like saying that walking on the side walk and walking in the moon are the same thing because walking is walking.

Agree to disagree…..

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2 years ago

Guest

Kim Williams

Moe – I have been “regular parent tired” and “special needs tired” and I will tell you that right now Rob is probably too tired to even explain the difference. This isn’t about testosterone level or having to be in two places at once. This is the difference between “black lives matter” and “all lives matter.”. It’s about perception. A friend of mine recounts the story of her child being in the hospital, at age 19 months, as a result of pneumonia from infection that came during chemotherapy, because her child was born with a rare genetic disorder that predisposed… Read more »

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2 years ago

Guest

Dmnich2

You don’t understand. You can make a meal and everyone will eat it or if they don’t, no biggie. In our world, food or lack of food may affect their meds or weight loss. While typical kids are playing sports and growing up, our kids can’t and so it’s a constant battle of what will keep them happy. Not helicopter parent style but everything literally bothers them from the touch of their clothes to sounds in the house and wait until they get older! Then the meltdowns are different. They’re older, bigger and stronger. They’re depressed as much as I… Read more »

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22 days ago

Guest

Moe

What is it you think parents without autistic children take for granted? Other parents also have appointments,meals, house cleaning, tantrums, sports, homework, jobs. All of these things. Maybe not to the same degree, but you act as if people don’t understand or get to see it from your side. Have you ever tried seeing from their side? And as for your energy level, I’ll suggest this again, get your testosterone checked And now with Lizzie back, isn’t this easing up a little for you? Can’t she take some of this weight? And the sleep thing, IMO you put the kids… Read more »

I meant no disrespect but you don’t get it… It’s okay that we don’t agree.

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2 years ago

Guest

Moe

It doesn’t take anything away from what you do to say yes all parenting is exhausting. I said it wasn’t the same level, but it’s like you refuse to be anything other than ‘the worst off’ when that’s simply not the case. All parenting is hard, just different levels of hard. It’s ok for you to try and say that without a but at the end of it. I may not have therapy sessions with 3 kids. But often times I have 2 kids that have to be at different places at the same time and only one of me.… Read more »

There is a world of difference and whether you choose to acknowledge that or not is up to you. It’s like saying that walking on the side walk and walking in the moon are the same thing because walking is walking.

Agree to disagree…..

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2 years ago

Guest

Kim Williams

Moe – I have been “regular parent tired” and “special needs tired” and I will tell you that right now Rob is probably too tired to even explain the difference. This isn’t about testosterone level or having to be in two places at once. This is the difference between “black lives matter” and “all lives matter.”. It’s about perception. A friend of mine recounts the story of her child being in the hospital, at age 19 months, as a result of pneumonia from infection that came during chemotherapy, because her child was born with a rare genetic disorder that predisposed… Read more »

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2 years ago

Guest

Moe

And I’m not trying to take away from what Rob and others are doing. But when he is just flat out dismissive of others it’s hard to try and relate. I even said they weren’t the same. But I started out with a question he totally ignored.

I wasn’t trying to pick a fight. I was asking. Again, saying they weren’t on the same level.

Moe, I think you assume that I’m being dismissive because I don’t directly state that all parenting is difficult. I’m not. This is a special needs parenting blog and as such, I talk about special needs parenting. I’m sorry if you feel I’m being dismissive but I’m truly not. At the same time, Kim is absolutely right in how she wisely put it. This isn’t about comparing paper cuts because both cuts hurt. It’s about trying to provide insight as to what my life as a special needs parent is like. While I’m speaking only for myself, in many ways,… Read more »

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2 years ago

Guest

Melissa

Rob all i can say is you are doing an amazing job and yes i totally get it…i have 2 children but only my son is in the process of being assessed for autism,which in itself is frustrating because we are struggling to get some help without a diagnosis. He starts kindergarten next year and im so thankful that we do have a government funded place called ECIS-early childhood intervention services and they are able to help with teacher support etc for now and next year. My son also has sensory issues and yes would rather starve than eat something… Read more »

You’re welcome.. I’m familiar with some of the struggles your family is facing and I know how tough it can be. Follow your heart and trust your instincts.. It sounds like you’re doing an awesome job…. ☺

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2 years ago

Guest

Melissa

Rob all i can say is you are doing an amazing job and yes i totally get it…i have 2 children but only my son is in the process of being assessed for autism,which in itself is frustrating because we are struggling to get some help without a diagnosis. He starts kindergarten next year and im so thankful that we do have a government funded place called ECIS-early childhood intervention services and they are able to help with teacher support etc for now and next year. My son also has sensory issues and yes would rather starve than eat something… Read more »

You’re welcome.. I’m familiar with some of the struggles your family is facing and I know how tough it can be. Follow your heart and trust your instincts.. It sounds like you’re doing an awesome job…. ☺

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2 years ago

Guest

Melissa

Rob all i can say is you are doing an amazing job and yes i totally get it…i have 2 children but only my son is in the process of being assessed for autism,which in itself is frustrating because we are struggling to get some help without a diagnosis. He starts kindergarten next year and im so thankful that we do have a government funded place called ECIS-early childhood intervention services and they are able to help with teacher support etc for now and next year. My son also has sensory issues and yes would rather starve than eat something… Read more »

God bless you for being an amazing and caring mother, against all odds. I have a 14 year old autism son and I go through the same things that you go through every single day. It’s a battle and I had to learn to put my sons health and well being first and put mine in the back burner. I understand all your struggles, sleepless nights , all your stress, it is not easy but I keep on pushing myself to learn more about autism and how I can better help my son and myself in handling and dealing with… Read more »

Nancy, Thank you so much for the kind words. It’s incredibly nice to meet you. It so nice to connect with people who get it. ☺ If I may offer a piece of unsolicited advice, please take care of yourself. So often we get caught up in the putting our kids first thing, that we neglect ourselves. If something happens to us, who will be there for our kids? I know it’s so much easier said than done and I struggle with this as well. Just remember that you need to be selfish before you can be selfless.. ☺ Best… Read more »

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1 year ago

Guest

Richard

Nancy, as an autistic person myself, now in my 40s and living independently (successfully most of the time with some basic support) I feel very deep compassion for Rob and his struggles. My mum was a widow, employed full time and raised 2 difficult children on her own, and it wore her out. This was before the days of OT and knowledge of SPD etc. But as much as I appreciate your difficulties I find it hard to hear you without anger, Nancy, if you call autism an “epidemic”, because it means you have allowed yourself to buy in to… Read more »

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1 month ago

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